Hi. I’m still struggling with joint pains. Have been back to the breast centre and decided to stop tamoxifen for a month-what a difference, the joint pains stopped, I could sleep and I felt so much better. However, have now gone back on it, joint pains are back but guess it’s a case of just putting up with it because it’s the best treatment on offer for me at the moment.
Now been taking it for two and a half years. I just wonder if the advice about taking it for 5 years will change with the result of the new ATLAS study which showed benefit in taking it for 10 years-that’s along time to have joint pains and feel rubbish!
10 years? NOOOOOOO!
This is SUCH a helpful , useful thread , many thanks, all!! It’s NOT just me , NOT all in my head ,NOT ‘just stress’,and there doesn’t seem to be much we can do about it so at least I know I’ve TRIED !!!
Helpfully I read another thread where a brave and sweet lady w/ 2ndaries said she would put up with anything to get back to not having 2ndaries.I often think of her and it helps to motivate me.You all make it easier with sharing your feelings your generous ,caring attitudes.
Hi all, if your around revcat I would be interested to know if your still on fish oil,vit d etc and are you still on painkillers? I’ve been on tamoxifen since last November and joint aches seem to be getting worse right now. Not great that I put on weight thru treatment! Gone back to weight watchers and “behaving” but the side effects from tam could be making things worse. As I’m thinking of trying supplements would be grateful for any input…probably my age too(51)!!!
Hi Valleygirl,
Yes I’m still around. I am still quaffing fish oil, star fower oil etc, and still taking the painkillers on prescription. So long as I keep up the whole lot, the pain is kept well under control. Once or twice I have run out of fish oil or glucosamine and have noticed the difference within a day or two. Similalry, I have had a couple of occasions when I’ve had to fast for anaesthetics, so could not take the pain killers, and it took a few days to re-establish good pain control.
I sympathise on the weight issue - I calorie count as it’s about the only thing that seems to work.
51 is very young - only 9 months older than me 
An update, still am twirling around the system as they are not sure if all of the pain is due to arthritis and spinal issues maybe to blame.
Have been told I have arthritis in both feet, both ankles, both hips, both elbows and spine it’s not RA because I have no swelling.
Think I was just under a year taking tam when it all started to kick in and it occurred very quickly almost overnight am still not convinced yet that the tamoxifen is not to blame xx
thanks for quick reply revcat I will head to holland and Barrett as soon as. Poss up to docs for painkillers although not really wanting to do so its hard going doing my very part time job walking around like I’m 90! Sounds bad reading my post back when I asked if you were around I meant in the sense of being on the forum lol nothing else. Not explaining well but thank you for imput I hope tamaxifen not going to stop me getting about etc!
I too have joint pain - knees, fingers, arms, legs… it started about 5 weeks after chemo finished and 3 weeks before rads started. The pain is mainly at night - and first thing in the morning my hands are so painful and stiff I can’t bend my fingers.
But - my onc wants me to wait till rads are finished before going on the Tamoxifen, and I’m on no medication at all at the moment.
He thinks the pain is ‘just’ a sudden menopause - I’m having a blood test next week to see how my ovaries are doing.
I started with severe joint pain during my fifth chemo (was on Fec-T). After chemo I was given Letrazole (Femara), and the joint pain got worse. I was encouraged to take it for 2 months, but when I couldn’t bear the pain in my joints any longer, I was put on Tamoxifen. That was 18 months ago, and although not as severe as it was - I’m still in a lot of pain with my feet, knees, elbows and hands. If I’m on my feet for any length of time, they burn and my left foot clicks unbearably. My knees crack and often feel as if I’ve twisted them. The thought of all this pain for the next three and a half years - well I’m trying to stay positive, but it’s not easy.
I’ve talked to my GP and Onc, and they say it’s not a side effect of Tamoxifen. In fact, they’ve said it is more likely to be my age - I’m 55. Considering I could run 10 miles 2 years ago, before cancer, and was very fit I can’t agree with them. I feel like an 80 year old most days, have no stamina despite exercising though dance, and I can’t stand for any length of time.
What I don’t udnerstand is, how can GPs and Oncologists say it isn’t a side effect, when so many people say they have these symptoms. It’s so frustrating when they say “you’re not getting any younger”. You go from being fit and well, to feeling like you will never be able to walk or dance again, and they tell you it’s your age.
I used to suffer from Plantar Fasciitis, a very painful bottom of the heel. Standing after sitting is really bad. For those with sore feet, maybe get this checked to see if thats the problem. At the moment I have tendonitis in my left foot which causes great pain.
Best wishes to everyone
Jane xxx
Strawberrydelight
I am on Letrozole, was on Tamoxifen for 5 years, no problem with there but on year 4 of Letrozole and having major problems with muscle spasms but like your Onc my Onc will just not accept it. He is arranging for me to have a full scan because he says it is unusual. I am 55 and was quite fit up until about a year ago but suddenly the stiffness has hit me.
Hazel
Well I am bewildered! I have always been told the link between Aromatase Inhibitors (Letrozole, Anastrozole etc) and joint pain was well established and undisputed. There are plenty of research papers covering it, including De Quervains (thumbs/wrists), achilles problems, clicky joints, arthralgia, tendonitis and tendinopathy, etc. etc. It is obviously good to get a rheumatic/arthritic cause ruled out but it really is not that rare.
Checkout the BCC leaflets, which state joint pain is a common side effect of these drugs:
ANASTROZOLE
http://www2.breastcancercare.org.uk/sites/default/files/bcc31\_anastrozole\_arimidex\_2011.pdf
LETROZOLE
http://www2.breastcancercare.org.uk/sites/default/files/letrozole\_femara.pdf
Hi ladies
i have been on Tamoxifen for 3 1/2 years now and have often said that the side effects from it was by far; the worst part of my BC journey.
However the past 6 months have been fantastic, I no longer stagger out of bed in the morning until my joints start working again, or drip with perspiration up to 20 times a day, wake up constantly throughout the nights, The night cramps, numb fingers, weight gain. The list is is never ending.
I just wanted to try and reassure you all by letting you know that my side effects have more or less disappeared now and I can honestly say that Im being to feel the way I did before my diagnosis.
Big hugs
Stella x
Stella, that’s brilliant, here’s hoping 
!! xx
Great to hear that Stella!
ive been on Tamoxifen since September 2011.
Ive suffered hip and lower back stiffness which Ive always attributed to the Tamoxifen but my BCN said could be after effects of Taxotere.
Ive also suffered with hot flushes/sweats and am taking Clonidine to try to counteract these. Not entirely sure it’s helping but may have reduced the frequency???
i can’t imagine ever feeling 100% like my pre BC self. But I’m just glad to be here with NED!! Aches and pains and flushes and all!!
if these symptoms do disappear, even better!!
Mandy xx
Hi there just spent half an hour reading through this thread right from beginning. Cant tell you how much it has helped me just to know that its not just me who is suffering with joint pains. I’ve been taking tamoxifen for 6 months - first opportunity to discuss side effects with oncologist will be at appt next month. I have no doubt that tamoxifen is causing my hips and feet to ache, especially in the mornings - never had any problems until started taking it so in my mind its a no brainer as they say.
However I am reluctant to take anymore drugs - had particularly horrible time with chemo so trying to just take my 20mg of tamoxifen and live with the side effects. I had never heard of the yellow card scheme - will fill one in now. Also just checked side effect list in Wockhardt pack - no mention of joint pain. Very frustrating as IT IS A SIDE EFFECT!
All the best to everyone who has contributed to this thread - you’ve helped make my day brighter. Thanks
I’ve just read all these posts too and am so reassured to hear I’m not on my own with the joint pain especially in my fingers and wrists. I was panicking that it was a sinister sign! Here’s hoping the SEs will lessen like they did for Stella…
Hi all, thanks to you all for sharing your experiences on Tamoxofin. I have been taking various forms for 3 years and only recently started experiencing hand and finger pain. I read your posts about the different forms of Tamoxofin and I cannot comment on that as I never took note of the names of the tables I took. I assumed they were all identical. My latest box however is Nolvadex-D and I had no trouble getting it from the chemist. It is due to expire in 2016. I bought it in Galway, Ireland. I think you can also get it on the internet.
Thanks again, and good wishes to all.
Carol
Hi Lynberi,
I am sorry you are having such a rough time . I don’t know the answer to your question as I have only had Tamoxifen (still on it and still with join pain). You might get more helpful replies either if you look for a thread about aromatase inhibitors or if you start a new one.
Hope you get some help and relief soon
I am blown away! I have recently finished 5 years of Tamoxifen and have had joint pain (back, hip, feet) for years. I’ve even had a back xray. No-one has ever said to me it could be Tamoxifen!! I just thought I was getting old. I can now add this to my only other side effect (hair loss). Not got away as lightly as I thought I had!
Hi there,
I have been on Tamoxifen for 8 months now, following surgery, chemo and radio treatments. In the last couple of months I have had severe low back pain. I have recently been for an x ray on my back and pelvic area (waiting on results) but am relieved to hear that other people have been suffering from the same things. I am very sore when I get up in the morning and have to take painkillers to get me going. I am just wondering what I’ll be like after 5 years of this if this is my quality of life at the moment. It keeps me from doing quite a lot and makes me really frustrated. I also get hot flushes but they are not as bad as this back pain.